Wednesday, 28 March 2018

Five
months ago I came home from the hospital, and all I could do was cry. I cried and cried and cried, mourning the body
I’d lost, and fearing the months ahead. I didn’t feel like I could do it. And five months on, I still don’t.

Nothing could have prepared me for how
physically, mentally and emotionally difficult this would all be. Sure, I
watched all of the YouTube videos I could find, and sure, I heard everyone
saying it was the worst time of their life, but I told myself I could get through
it, because it wouldn’t last forever. But here I am, five months on, and things
are still so tough. In fact, they’re even tougher. Things might not be
as physically difficult as they used to be... but now, I’m emotionally
exhausted.

Back then, everything was still new. Every tiny
bit of progress felt exciting. I was hopeful for what was to come. But now it’s
tedious, endless, torturous. It’s been so long, yet I still haven’t made half
the progress I’d hoped to. I wake up every morning, and I just don't want
to face another day of it. And though I want to keep heading toward the
light at the end of the tunnel, I’m not even sure that there is one. Because
right now, I’m trapped in the dark.

When
will I feel normal again? Will I ever feel normal again?

When
will I make a complete recovery? Will I
ever make a complete recovery?

At
five months, I’m starting to lose my patience. I had it in my head: “People
say you start to feel normal again at six months.” Six months. Six
months. Six months. “You just have to hold out for six months.” Yet
here I am, heading toward the six month mark, and I don’t even feel close to
normal. And, if I’m being honest? That terrifies me.

I want my strength back. I
want my energy back. I want my life back.

I’m
21 years old. I’ve just graduated from university. Everyone around me is moving
on with their lives – getting houses, jobs, qualifications, Master degrees –
and I’m trapped here. My present life consists of this empty, endless,
agonising routine of pain, frustration, tiredness, repetitiveness, loneliness...
And my future? Well... it’s blank. I can’t even begin to plan
for it, because it’s impossible to picture. It’s impossible to know what I will
and won’t be able to do, or when I will and won’t be able to do it. I
feel trapped, and I feel empty. I keep pushing on every day, but it feels like
I have nothing to keep pushing on for.

I
watch everybody, posting their positive quotes, having their fun days out,
building their futures... and I feel so detached from it all – stuck in my bed,
or within my own four walls, or stuck in my body, that just won’t work the way
I want it to. I want so badly to be a part of it all and it makes my heart
hurt. I feel so left behind. I’m sick of having my life on hold, at the
exact time that it should just be beginning.

But
on top of it all – on top of all of this – is the guilt. The guilt that comes
every time I ask “how is this fair?”, or “why is this happening to me?”, when
there are people going through so much worse. There are people
dying. There are people who’ve gone through this every single day of their
lives, and have never known any different. Yet here I am, writing 600+ words
of self-pity.

I
said when I left the hospital that I’d have to take recovery “step
by literal step at a time”. And I’m trying. I really am. But the
more steps you take, the harder it gets. The more exhausted you become. And
it’s even harder to keep going when you just can’t see the finish line.

Monday, 26 March 2018

If you've read my most recent blog posts (or caught any of my
moany tweets), you’ll probably know that, five months ago, I underwent spinal
fusion surgery for a condition called scoliosis (pronounced sko-lee-o-sis). Everything is explained in more detail in this post–but, in short, scoliosis is a medical
condition “where the spine twists and curves to the side”. The surgery involved my surgeon straightening out my spine as
much as possible, before fusing the bones together to try and prevent my spine from re-curving. To hold the bones in place while they fuse
(which should take 1-2 years), two metal rods were placed on either side of my
spine, and then attached using 18 metal screws. As long as there's no damage, breakage, or serious issues with the hardware, it should remain in my back for the rest of my life.

Pre-op vs. post-op X-Rays

Before my operation, I spent so much time reading and watching
videos about other people’s experience with the surgery. It helped a lot –
both when I was in hospital, and also now that I’m recovering at home –
especially because the operation isn’t all that common (it’s performed on less
than 0.1% of the population), so it can be quite hard to get a lot of
information about it.

I knew I wanted to write about my own experience at one point in
the hopes that it might help someone else, but I’ve been putting it off for a
while now. Over the last few months, I’ve been anxiously waiting for my
follow-up X-Ray and appointment with my surgeon, and I was ridiculously nervous
to hear what he was going to say. There are a lot of things that can go wrong
with spinal fusion surgery, and some people end up needing a second operation –
or, in the worst cases, they might need several more. In all honesty, I
didn’t feel ready to re-visit my hospital experience in writing until I knew
for sure that I wouldn’t have to re-visit it in real life. (Or at
least not any time soon, anyway!)

I was actually hoping to have an update by January, because spinal
fusion patients normally have a follow-up X-Ray at 3 months to check that
everything is okay with their hardware. Basically, everything needs to be
correctly in place for the first 1-2 years while the spine is still healing, so
they check to make sure that the hardware hasn’t moved, come loose, or become
damaged or broken. If that’s the case, then they’ll need to re-operate – which, I'll be honest, was pretty much my worst nightmare.

My 3 month appointment was supposed to be in January, but of
course this was the same month as the
NHS-crisis-that-the-government-swore-to-god-wasn’t-a-crisis, so it ended up
getting postponed until March. I’m not going to lie: I cried. A lot. I was so
anxious to hear whether everything was okay or not, and the wait and the worry
just felt like it was dragging on forever. Fortunately though, my appointment
got cancelled a second time – but this time, it was rescheduled for February! I
could’ve done a happy-dance. (...If, y’know, I hadn’t just had major spinal
surgery.

Other than that, I guess I’d be lying if I said I wasn’t
struggling. My surgeon and my physiotherapist both say I’m doing well, but it
doesn’t feel like it. Even though I’ve come a hell of a long way from not even
being able to feed myself, I still haven’t made half as much progress as I’d
hoped to by month five. I wasn’t at all prepared for how long, or how
physically and emotionally difficult this would be. I really just want my life
back. (But that’s a post for another time.)

I’m still struggling to do much writing (which is killing me),
because sitting for long periods of time post-op still feels quite
uncomfortable, and can sometimes get pretty painful. I’ve barely spent any time
using a laptop since my surgery, but I really am hoping to get back into
posting as best I can. I miss it so much, and I’ve got so much that I want to
write about. Hopefully, I’ll have a new post up soon!

Until then, I’ll leave you with some cheeky pre-op and post-op
Before and After shots. My scar is healing up nicely, and I'm also clearly getting
better at learning how to stand straight, haha! My hips still aren't perfectly
even and my body isn't perfectly straight, but it's lovely to be able to wear
tight dresses now without feeling self-conscious about my un-even hips! (Not
that I've been dressing up much lately, but I'm sure I'll get there!!)

Thursday, 16 November 2017

I spent every day in the
hospital wanting so badly to be home. Tick... tick... tick... But
when I shuffled in through my front door a week later, all I could do was cry.
There was no more counting the days in the hospital. Day 1... Day 2... Day
3... But now it’s counting the days, weeks, months to recovery. Month
4... Month 5... Month 6... Sure, the operation is
behind me, but now there are months – a year – of recovery ahead, and absolutely no going back.

So I cried as I mourned
the body I’d just lost. My strength. My independence. My ability to
walk, move, lift, twist, bend.

I cried in fear of
what’s to come. When will the pain stop? When will I feel normal again?
When will I be normal again?

Being home and back to
‘reality’ suddenly made everything feel real. Being ‘not okay’ in hospital
felt normal, but being ‘not okay’ at home feels sad and strange and scary and
daunting.

When I got home, I felt
like I should be happy. Or at the very least, relieved. But I couldn’t. Because
it’s not over. It’s just beginning.

And I guess all I can do
now is keep on pushing forward. Literal step by literal step at a time.

Tuesday, 24 October 2017

As I stood in my bikini at 13 years old examining my reflection in the mirror, I had no idea that what I saw was anything to be concerned about. Nor did I realise at 14 years old, when the doctor looked at my body and said “scoliosis”. I had no idea that, at 21 years old, I'd have a letter on my fridge reading: “31st October, 2017: Spinal fusion surgery”. But now, here I am, counting down the days until my spine becomes part-bone, part-metal.

What is scoliosis?

For
those of you who might not have heard of it, scoliosis (pronounced sko-lee-o-sis) is a medical condition “where the
spine twists and curves to the side”.

I have
one curve in my upper spine, and another in my lower spine, so my spine is actually
an ‘S’ shape. (Below is a photo of my X-Ray to show you what I
mean!) The upper curve is less severe, while the lower one actually rotates as well as curving. It also affects the position of my hips, which means that one of my legs has grown slightly longer than the other.

Scoliosis isn't always necessarily a ‘bad’ condition, and it's
*definitely* not one that often requires surgery (so don't let a diagnosis cause instant panic!). It can cause pain, difficulties and more serious problems (for some people, it can crush bones, organs and lungs), but it's different for every person. It often depends on certain factors, like how big the curve is, and where in the spine it is.

Some quick facts:

·Scoliosis
affects 2-3% of the population
(that’s 1.6 million people in the UK)

·Less than1% of the population will develop
scoliosis that requires treatment

·Less than0.1% will require surgery

·Scoliosis is
most commonly diagnosed for the first time in children aged 10-15

·20% of people
with relatives who have scoliosis also develop the condition

·80% of all
scoliosis cases have an unknown cause

·Scoliosis is more common amongst girls than boys

There are a few different types of scoliosis.
It can be something that you’re born with, something that develops in old age, or
something that’s caused by a separate nerve or muscle condition – but I have
the most common type, known as Adolescent Idiopathic Scoliosis.

‘Adolescent’
means that the curves seemed to develop when I hit puberty, and ‘Idiopathic’
means that there's no known cause or explanation for why this happened.

Diagnosis

I'm
not really sure exactly when my scoliosis started developing, but I was
diagnosed at age 14. I had been experiencing back pain,
but this wasn’t the reason that prompted us to go to the doctor. What triggered
the doctor’s visit was spotting that I had two noticeably uneven hips.

My
family and I were on holidays in Portugal, and I’d packed a couple of bikinis
for the pool. When I was stood in the mirror one day, I noticed how
asymmetrical my hips were.

I
didn’t think anything of it – I just found it quite amusing, and assumed that they’d
probably even out as my body developed. But, when I pointed it out to my mum,
she wasn’t so sure.

When
we went to the doctor, I was asked to
bend over and try and touch my toes – not because she was testing to see whether
I could reach them or not (thank god, because I definitely can't!), but
because this allowed her to examine my back. This is known as the “Adam’s Forward Bend Test”, where doctors will
check for signs of scoliosis such as:

·One shoulder or shoulder blade
appearing higher than the other

·Rib cage appearing higher on one
side

·One hip appearing higher or more
prominent than the other

·The waist appearing uneven

·The body tilting to one side

·One leg appearing shorter than
the other

This isn’t always a fool-proof
method of spotting scoliosis – some people’s backs may
look okay when they actually aren’t – but it might be something worth trying
out at home if you suspect that you or your child may have it. Just make sure you go to a doctor if you think that something is wrong!

The
doctor confirmed that I had scoliosis (which meant absolutely nothing to me at
the time), and then referred me to the
hospital for some back X-Rays. It wasn’t until I was shown my X-Rays that I started to get an idea of what was going on with my spine (and finally
understood why I experienced so much back pain!).

From
a spinal X-Ray, every scoliosis patient
should be given a measurement of the size of their curve, which gets measured
in degrees. If I'm remembering right, I think I was given a measurement of a 12 degree curve in my upper back, and a 21
degree curve in my lower back.Anyone
with a curve above 10 degrees is considered to have scoliosis, but curves under 20 degrees are considered
mild.

At
first, I was just told that I would be
called into hospital every 6 months for more X-Rays to monitor my scoliosis.
(This is particularly important when you’re still growing, because the likelihood is that, as you grow, the
size of your curve will, too.) I was also referred to a physiotherapist to
try and help with my back pain, but eventually, stubborn, impatient, lazy
teenage-me got bored of the whole thing and gave up on it.

***

Things
changed when I turned 15. I went back to the hospital for my usual X-Rays, and
then to discuss them with my doctor. But she looked concerned. “Your spine has
progressed a lot since last time,” she said. “You’ll have to be fitted with a
brace.”

Treatment: Back brace

The hospital referred me to an
Orthopaedic Centre so I could get more specialist care for
my scoliosis; and, while I waited to be called in, I had a cast of my back taken at the hospital so I could be fitted
for my back brace.

A
back brace is most typically used to treat scoliosis patients
who are still growing. It can’t be used to reduce their curve(s), but the hope is that it might prevent the
scoliosis from getting worse as the patient grows.

The
brace is custom-fit to their body and is made out of a hard plastic. The idea
is that it will put pressure on the
parts of the spine that are curving, to try and limit or stop its progression.
I was told that I would have to wear my brace all day, but could take it off to
sleep.

I was allowed to choose the colour of the straps for my brace, and apparently 15-year-old me thought a mix of pink and purple was a great idea. I have a feeling it won't catch on, though.

Treatment: Spinal fusion surgery

Turns
out I never needed that back brace. I think I’d only worn it at home for a day
before attending my appointment at the Orthopaedics Centre and having my X-Ray
examined by the specialist.

“It’s
too late. That’s not going to do anything for you,” he told me. He measured my lower
curve at 43 degrees, and said it was too
severe and too late in my growth for the brace to have any effect.

When
I was first told that I qualified for spine surgery, I wasn’t scared – I was
actually happy. I thought that sounded great – an answer to all of my problems! (Needless to say, I was a *little bit*naïve.) I thought the surgery would give me a
normal body, get rid of my back pain, make me stronger, and lessen my
limitations. I remember thinking “wow, I’ll actually be strong enough to pick
up my future child without my back hurting”. But it turns out, none of those are
guarantees.

As
my surgeon explained, the main aim of
this surgery isn’t to put an end to my current problems – it’s to stop them
from getting worse.

Once someone’s spinal
curvature reaches a certain size, it’s likely to keep getting bigger throughout the
rest of their life – particularly as they get
older and their bones get weaker. Spinal fusion surgery aims to stop that.

How does the surgery work?

It
involves straightening out the spine as
much as possible before fusing the
bones together to try and prevent the spine from re-curving.

To hold the bones in place
while they fuse together (which actually takes a year or more!), two metal rods
are placed on either side of the spine and attached using metal screws.
These rods and screws should remain in your body for the rest of your life.

My fusion is only going to be done on the curve in my lower back, due to my upper curve not being as severe. (I think it's currently just over 20 degrees in size.) Surgeons generally aim to
operate on as little of their patient’s spine as possible, because,
unfortunately, spinal fusion surgery limits motion. (There are other
surgical options available to treat scoliosis, but none on the NHS/in the UK.)

Operation day

As
my consultant could see from my X-Rays that I’d almost finished growing at 15,
he said that I could wait until I was 18 (and had definitely finished growing)
before getting the surgery. (Like I said, scoliosis is likely to get worse as you grow. The fact
that I didn’t have much growing left to do meant that my scoliosis was unlikely
to get much worse in that time-frame.) When I finally did turn 18, it was a bit of a faff finally getting to that point – more X-Rays, an appointment to discuss the surgery, an MRI scan, a lot of waiting around... I was in university by the time I was told it would go ahead. My consultant said he’d make sure my operation was in the summer, so that the majority of my recovery time could happen over the holidays (and I would miss less uni as a result). This never happened though, and the operation date ended up being in the middle of my second year of university. I really didn’t want to take time off, so I promptly said “thanks but no thanks”, and asked to be taken off the waiting list until I’d graduated.

So now... here I am. On the 31st October 2017, I’m going to wake up with a new body – and that’s the body I’m going to have for the rest of my life. I’ll have to learn to stand up and sit and walk again. I’ll never be able to bend or twist or move in the same way.

I’m not going to lie – it’s pretty daunting. For the rest of my life, I’ll have two metal rods holding a part of my spine stiff. I’ll have to be careful with how I move, and with what I lift. My flexibility will be reduced. (Because of where my curve is, I actually have to be fused in the part of my spine with the most flexibility, which is a massive bummer.)

It’s not that it’s all doom and gloom, though. For some people, this surgery is the best thing that has ever happened to them. I’ve heard of people who go on to absolutely thrive. Some say that they’re stronger, less limited, and in less pain; some say that they’re weaker, more limited, and in more pain. You never know. And I’ll admit, it’s scary not knowing. But this is (probably... hopefully) the best option for me in the long-run.

***

I’ll
definitely post an entire blog about the surgery at some point, and I expect
that I might just generally be blogging more after the op – not necessarily
about my scoliosis, but just as a way to kill time! (The recovery time is pretty long, so I’m probably going to end up hella bored!)

If
you’ve actually read through to the end of this post, thank you! This is by far
the longest blog I’ve ever posted. (Perhaps the next time I post, I’ll be partly
made of metal!) Oh, and if you have any questions – no matter how personal – please don’t hesitate to message me!

Thursday, 27 July 2017

I’m writing this on
Thursday 20th July, not long after hearing the heart-breaking news that
Linkin Park’s Chester Bennington has taken his own life.

Obviously, there’s been
an outpouring of grief online – but that’s not all.

People are asking for
change.

People want the stigma
around mental illness to end.

So let’s talk about it.
Let’s get the conversation going. The more we talk about it, the less ‘taboo’
it’ll feel.

And this is so
important.

We can’t keep living in
a world where suffering is met with judgement. We can’t keep living in a world
where people feel that they have to keep their problems hidden. We need to live
in a world where people feel comfortable enough to open up about their mental
health. Where we encourage these conversations, instead of shutting them down.
Where we actively try to fight the stigma. Where we show that we’re there for
anyone who is suffering. Because this
plays such a huge part in people’s mental well-being.

Let’s not be part of the
problem – let’s work to minimise it. Let's Talk About Mental Health:

► Post
about it. Tweet about it. Blog about it. Whether you’re suffering or not, your
contribution to the conversation is so valuable.

►
Share. Retweet. Reblog. Spread the word. You never know who it might help.

►
Let people know that you’re there to talk to, free of judgement

► Share your own stories. (You never know – this could encourage others
to do the same.)

►
Reach out for help if you’re struggling. Whether that’s to a loved one or a
professional, it’s so important you don’t keep your problems to yourself.

►
Find a way to open up that suits you; whether that’s through text or Facebook
message, over coffee, or even through a letter